My daughter has been suffering from post-concussion syndrome for 18 months now and it keeps getting worse. It started with an assault that left her unable to read or look at computer screens without triggering an instant migraine. Eight months after the assault she suffered an extremely minor bump to the head and found shortly after that she was getting migraines from listening to audiobooks. Every couple of months since then, there have been other minor incidents, such as hitting her head slightly or being in a vehicle that stopped too suddenly, which has left her with new migraine triggers.

Now she is worse than she has ever been before, she is no longer able to read, write, look at computer screens, look at streetlights, listen to music or even talk to us without getting a migraine. She has developed an extreme sound sensitivity, and finds that migraines are even triggered by sounds made by her own body such as cracking joints or even just swallowing. Earplugs do nothing to block these sounds, so for the last month, she has had an uninterrupted migraine that no medication seems to be able to treat. She has tried Propanalol, Sumatriptan, Topamax and Gabapentin. None of these seem to help. The Topamax actually made her migraines worse. She is so disabled now that she can do almost nothing other than lie in bed all day with her eyes closed and her earplugs in. If she even says one sentence to us it causes a migraine now. We are starting to lose hope because things keep getting worse, and there seems to be no way to stop the cycle that she is in.

I am posting this looking for any advice or any reason to feel that this will ever get better. Has anyone experienced anything like this? How do we end the cycle that she is in so that after 18 long months she can finally begin to recover? Her main migraine symptoms are a persistent throbbing, dizziness and extreme pressure in her head. Please let me know if there is anything we can do. If anyone has had these types of symptoms and gotten better, please let me know so we can have some hope. Thank you.

Sorry to hear that and I can relate to some of it.

I had the dizziness and head pressure for a very long time. Just looking at someone and talking made me dizzy and tired. I tried different medications (all the meds you mentioned and more) and finally settled with Xanax 3 times for a while. (Also many therapies during that course). Then I tapered down on Xanax and now on minimum dosage and take as I needed for traveling or other things.

As I have been discussing in other thread the place I live (especially cold places) also affects my symptoms.

Have you been a vestibular specialist and ruled out any complex inner ear stuff?

I dont know I got better or I am used to the symptoms now. But still have quite a few struggles on a daily basis.

JudyAnn,

Has your daughter ever had her Cerebral Spinal Fluid pressure tested ? A common test is a spinal tap. If the pressure is too high, the relief will often be instantaneous. Here is one explanation of it. : http://adc.bmj.com/content/78/1/89.full An MRI can also be used.

Has she been prescribe anti-biotics ? In rare cases, they can give relief.

Has the doc tried an anti-depressant ? maybe amitriptyline, nortriptyline or an SSRI or SNRI.

Or, benzodiazepine like Klonopin, Xanax, Ativan ?

An anti-inflammatory diet may help.

It sounds like some shot in the dark experiments may be worthwhile.

The docs try to find something that makes medical sense. Sometimes, you have think way outside the box.

Thank you PCS Life and of course, Mark in Idaho for your replies. I will pass your posts and suggestions on to my daughter. She actually dictated my original post, because only she could put into words what she is suffering. By the way, my daughter is 30 years old and feels that she has reverted back to a childlike dependency because of her symptoms.

Judyann

I am so sorry for her overwhelming symptoms. I wonder if she had tried walking to help her feel better until the doctors can find some relief.

Walking on a nature trail can really help reduce many of the symptoms. Meditation can also help but can be difficult until the symptoms are under be control.

JudyAnn:
Mark has some good suggestions. I am one of the rare cases where antibiotics helps with my headaches. I tried twice in the past 6 years. Ofcourse they give it for a very short course (about a week).

I know one guy who works as a housekeeping manager at hilton (demanding job) who had some piercing injury back of the head many years ago. For him only antibiotics helps with headaches and he always have tough time to get prescribed by doctors for obvious reasons.

Xanax works for me overall symptoms ofcourse.

I also did spinal tap to rule out any pressure or any other weird things. My pressure in the normal range and everything else normal. It was an outpatient procedure.

Give it a shot for out of the box experiments. Personally quite a few out of the box things work for me.

JudyAnn,

I don't have any theories but I wanted to at least let you and your daughter know I wish my very best and prayers for her.

This PCS is a real guessing game at times. This week I have gone backwards to symptoms I haven't had for a couple of months now, I haven't a clue why or where they come from so she certainly isn't alone.

Bud

Your daughter sounds like she is in a lot of pain. Sometimes I think there is a cumultive effect. I had several head injuries and this last one really tipped me. HOWEVER, even before this one, the sensory issues were off the scale. I also wear earplugs all the time and cannot eat much and clothes feel funny etc. All my sensory issues are jacked up high.

There may also be genetics involved as to why someone had PCS and someone else not. And PTSD can complicate it, too. Many woman out here have many head injuries from violence and other traumas which not only cause head injuries but PTSD. It is like the soldiers who not only endure an IED but also all the trauma that is involved.

Something that helps me a lot is the Vitamin Section they have listed here. Sometimes hiring a personal trainer is helpful to help you work out but to also talk to you and be a light to you at this time and help you seek wellness and healing. The brain is an organ but so much more. It is also Thought.


I hope your daughter feels better soon and finds support here. I know I really do and it helps when others say what works and then I try it and IT DOES work!
She is lucky to have your support.

My daughter wants to thank you for your advice. She is open to trying your suggestions and we will keep you posted.

It does help her a lot and make her feel better to have the support. Thank you all!

My daughter is now saying she is not willing to get Botox injections for her migraines because it would be injected into her temples, which are already swollen. She is afraid that having this injection would cause a concussion, because one happened to her before when an ER doctor jabbed her in the temple.

I am hoping that she will get the Botox injections because I hope it will help her migraines - this is almost her last hope to get rid of her migraines and eventually resume a normal life. Does anyone feel she is being overcautious, or I am not being cautious enough? I would appreciate your advice on this.

Thank you.